Today is International Day of Persons with Disabilities. This day was established by the United Nations General Assembly 32 years ago in 1992 to promote the rights and wellbeing of people with disabilities, it also commemorates the United Nations Convention on the Rights of Persons with Disabilities, which was adopted in 2006.
You may have never heard of this day before, and you may wonder why it even exists. For many people becoming disabled is not something they celebrate, the change in their life was a negative one that took a long time to accept, so why would we celebrate it? 2014 data from disabilitysport.org.uk showed that there were 11 million people with a disability in the UK. Less than 8% of these needed to use a wheelchair, and fewer than 2-% were born with their disability. Most people will acquire a disability later in life during their working life. There was an estimated 9 million people in the UK with a hearing impairment.
The theme this year is from the World Health Organisation is “Amplifying the leadership of persons with disabilities for an inclusive and sustainable future”. Disabled people are very rarely able to access leadership roles in the health sector due to barriers such as discrimination or exclusion from education and employment opportunities. In order to create a more inclusive and sustainable future the World Health Organisation says including disabled people in decision-making processes in the health sector is essential to drive change.
Living with a disability isn’t always easy, but most of the difficulties come from living in a world that is not inclusive. You may think that a lot of places have ramps, large print, lifts, T-loops etc but that’s just the basics. Imagine entering a clothes shop, it’s a step free entrance so that’s brilliant, but then there’s no clear aisles and the clothes are very close together, now we all know this is to fit more in, more selection for customers, more chance of a purchase, which means more profit. But now imagine you’re in a wheelchair, use a stick/crutches, or maybe a rollator. These things require a little extra space to manouveur and in some shops it would be near impossible to get around the shop to see everything. Now let’s apply this to a restaurant, most try and fit as many tables in as possible, again for the profits. But these make it really difficult to move around if you’re disabled.
So imagine planning an outing with friends, maybe it’s someone’s birthday, they want to go for a nice meal and maybe some drinks. Sounds simple enough yes? Now let’s add a disability into the mix. Firstly you need to deicde if you’re well enough to go in the first place, you may struggle with fatigue, and even with mobility aids sometimes it’s still too much. You decide you’re well enough to go, now you need to find out where you’re going, is the establishment accessible? Can you get in safely without causing a fuss? They’ve mentioned going for drinks afterwards, you need to know where they plan to go, how far is it to walk to? And again is the next venue accessible enough for you? Now imagine doing this every time you want to leave the house. Even going to grab a pint of milk from the local shop – is that even possible? Think about your local shop, is it accessible? Would a wheelchair user be able to use it independently?
This analogy can be applied to everything in life, going out for food, doing the food shopping, attending the office/workplace, using public transport, spending time with friends and family, even attending health appointments. It’s exhausting and just adds an extra load on top of already having a disability. It’s no wonder that so many people with a disability suffer so much from fatigue when everything must be planned out. In a truly accessible world, we would not have to think ahead so much. At the moment if a wheelchair user wants to take the train, they ideally need to pre-book to ensure they will be offered support to access the train, and even then they are often just left on a train to fend for themselves without a safe way to embark.
Going by the 2014 data 880,000 of disabled people are wheelchair users, that leaves just over 10 million disabled people with a disability that would be classed as invisible. Some may use a mobility aid such as a stick, crutch, or rollator. But if you see them without a mobility aid, this doesn’t always mean they are fine. Even in healthcare settings disabilities are not considered, it is a constant battle to advocate for ourselves and the support or adjustments that we need. So how do we change this?
We need to call out inaccessibility when we see it, question why they haven’t made it accessible – and the answer of ‘we don’t get any wheelchair users in here’ isn’t really an answer as if it’s not accessible then of course you haven’t! We need to advocate for change, be inclusive to everyone, whether they have a physical disability, hearing or visual impairment, are neurodivergent, have a learning disability or something else. Since covid there has been an increase in people who have Myalgic Encephalomyelitis (also known as chronic fatigue syndrome), you may have colleagues who are suffering post covid. They may look the same as before and seem fine, but they may have made the odd comment about struggling with fatigue, brain fog, and pain. Maybe you’ve noticed some days they’re quieter than others and you’ve wondered why that is, you may have thought they’re in a mood or that they’re being rude. But the truth is they’re conserving as much energy as they possibly can just to get through the day.
For many people with a disability every day is planned meticulously, not just to ensure where they go is accessible to their needs but also to ensure they have the right energy levels they need. Many people use something called the spoon theory to explain this. Spoons are used as a metaphor for a unit of energy for the mental and physical activities people face every day. The thought is you have a certain number of spoons to use each day. Now this works in theory, but in practice many disabled people will tell you that they go over their spoons limit constantly to be included and feel like they fit in.
Everyday I speak to people who do not class themselves as disabled, even though they may fit the criteria under the Equality Act 2010, this again is down to living in a world that is inaccessible. Being disabled or different is often seen as weak. Having to say ‘I cannot do that’ or ‘that place isn’t accessible can we go somewhere else’ is really hard to do! But wouldn’t you rather your friend, colleague, or family member be able to enjoy themselves without causing additional pain or discomfort? The change needed must come from everyone, it’s not just up to disabled people to fight for this change. So the next time you see something that is inaccessible or not inclusive why not ask some questions as to why changes cannot be made? And let’s stop expecting people to pretend they aren’t in pain or tired just to fit in. Especially at this time of year when so much is expected just because it is Christmas. Social gatherings, tree trimming, shopping, and often a lot of visiting. If you’re having a Christmas social event, try and ensure plenty of seating so people can use this to rest. Don’t question if someone isn’t drinking, maybe this helps them to preserve spoons or public transport isn’t an option for them to get home. For neurodivergent people they may benefit from a quiet space or just some quiet time alone, don’t feel bad if they seem to escape every so often. This is what they need to do in order to attend social events.
I recently created an online spoons game to help explain this to some colleagues, if you’d like to give it a go please go to spoons.geek.wales It’s designed to give you some insight on the planning that we must do to try and ensure we look after ourselves. As mentioned above it’s not completely accurate as disabled people often go over their spoon limits which has consequences. The scenarios also do not take into account the previous day or week. If you would like to submit a scenario please get in touch FightingFitAmy@outlook.com
Fighting Fit 